Hi Chrissie
We all felt exactly the same as you,devastating ,no matter what age you are or how fit you are it is devastating!!!:-( and I am the carer;-)
Takes a little time to realise it's not the end of your world,it just becomes a different world,I would try to look at the positives,Myeloma found early!!!!,young and fit!!!! Children to keep you going!!!!,
Learn all you can,this will give you confidence ,and I am sure lots of people will come on and tell you,you will get through this,and be there for many years to come,ask any questions,lastly welcome to the roller coaster.Eve
Hi Mandy
If you need it I would not worry about the amount as long as it works,Slims on slow release OxyContin and takes paracetamol to enhance it some times.
I would work on your fitness,Slim now has problems walking any distances,but we think it is to do either with a artery blockage he had removed or the hip,but at the moment,getting his bodies immune system up,is more important so he can go back on Chemo.
Ad Cal works hand in hand with the Zometa !!!
Hope this helps if you are not on slow release ,this might be the problem.Or may be it's just early days and will take a bit of time for healing.Eve
Hi Mandy
That is a lot of Medication, OxyContin is addictive,common name hill billy heron,my husband has been on it for over 2 years,but not at the dose you are taking!!! And has managed to cut down the dose 5mm at a time.He has never had a good remission only 6 months,so the Myeloma has all ways been active.
You do not say how much damage you have to your bones,if I was you I would ask !!! And find out were your weak spots are,so when you have pain you can make a judgement ,if it's a weak spot.
My husbands spine,ribs shoulders,skull are all damaged,but after taking Ad -Cal and Zometa for 2 3/4 years and having an active disease for most of the time his bones are quiet good.
He use to walk a lot as this helps the muscle round the bones,and the worst thing he can do is sit still for any length of time,and this is on strong medication.
You and you alone can only tell how much pain you are in,and how much medication you need,if you need it take it,as in the grand scheme of Myeloma it's a small price to pay to be comfortable. Eve
Hi John
I would say its worth buying,Slim does not have one,and has been managing with the settee recliner,which is well used as often is more comfortable than sleeping in bed.
I have tried to persuade him to think about a hospital bed,but says he is not ready for that yet.
Ido think you might pick up a bargain,if you are prepared to have a second hand one,worth looking round.
My attitude anything that makes life easier and more comfortable. Eve
Hi Pat
Good to hear you are doing ok,and planning such wonderful trips,your news is wonderful and so hopeful to newbies on here.Love Eve
Hi Sarah
yes your mum was very brave, and still thinking of her lovely daughter's , in many ways your mum got her wish she did not want to spoil your Christmas, no one can prepare you for your mums death, but from what you say there was an acceptance on your mums part.
She might not be sitting at the Christmas table, but she will still be with you,
I would not think about what amount of time , people said your mum had or how quickly it developed, I have a believe that people choose there own time.
My condolences to you and your sister, I hope you find some comfort in your mums last holiday, plus she chose her own time, and did not want her lovely daughter's to be unhappy at Christmas.Love Eve
Hi Jan
do not apologise, we have all been were you are standing right now, and we have all wanted to know why to lots of questions, and at times want to rant and rave and get things off are chest, this is all normal.
I still would recommend you ring Ellen or Maggi on the free number, they are very easy to talk to, and can help you with questions you can ask when you see consultant, plus send you information which will help you.
This is a big learning curve for you, as time progresses you will be come the expert on your husband, learn all you can.
As for are lovely Tom, who is a bit of a star, keeps us all laughing, I am beging to think he has found a miracle cure!!! Vodka, plus his attertude is on wards and up wards , and he has been doing it for years, no harm in taking a leaf from his book!!!!
you will find people on here who can help you, cheer you up, and give you hope. EVE
Hi Gill Min and Sarah
well I think you ladies have done wonderful, you all should be very proud of your achievements, Min hanging doors, I think thats wonderfull, it gives hope for people like me, I tell myself I can do it, and take a deep breath, but you three are achieving things you thought you could not do alone.:-D 🙂
Gill you did make me laugh again, the offer is there if you travel again!
My best wishers to you all, and looking forward to hearing your adventures.Love Eve
Hi Babs
well we have lots of appointments as Slims blood is being checked twice a week, then in for platelets as needed, but none at the moment for the 22 if one comes up I will let you know.
Baba in many ways I agree with hubby and daughter, its time to lock Myeloma in the cupboard, you know it will come and find you! So get your running shoes on and get as far away as posslble, enjoy life to the full for all the people on here who cannot, put normality back in your life.
like me you have made cyber friends they will still be there, I for one will follow your travels , I miss travelling so when you show all the wonderful photos of you travelling I am envious, so do not waste your time being sad.
good luck love Eve
Hi Jan
Welcome,but sorry you have had to join the roller coaster:-)
It is such a shock when this first starts,and a big learning curve,Ellen on the free number can help you with any questions you have,as your husband has two diseases it becomes more complicated ,but saying that trials do open medication that some times is not available
Intense cold comes from within the body,we have an electric blanket with controls either side,so my husband can have his on all night . Hot drinks like oxo and clear soups seem to warm my husband up. Do keep a careful eye on his BP and temperature . It is a big learning curve,
As for life expectancy ,who can say,these diseases effect everyone differently,!!
After 2 3/4 years,I have learn,t not to look to far into the future,my motto is why worry about tomorrow and spoil today:-S
It has held me together,plus given me an inner peace,you must find your contentment,because it will help you in the future..
My best wishes to you Jan. Eve
Dear John
I am so sorry to hear your news,unexpected is the only way to put it.
You must be shell shocked yourself ? Some times with Amyloids it effects organs like the heart,Mari lost her husband recently the main cause Amyliods ,.
It is incredible injustice ,your world has come crashing down,we all are aware that one day it is going to be us,I do not know which is worst having time to adjust to the circumstances or having hope snatched away.
I do hope June passed peacefully,and you can take some comfort from that,
My thoughts are with you at this sad time.Love Eve
Hi Jo:-D 🙂
Welcome:-)
May I suggest you contact Ellen or Maggi at the free number at the top of this page8-)
It's very early days for you,but as your husband was a GP,he is no longer looking through rose coloured glasses,so I would imagine he is finding it very hard plus he does not want to upset you too much,so you are both worrying about upsetting each other. This is the time to talk!!! Big time,let him talk as it is him who has terminal Myeloma.
I can only tell you,there is life after being diagnosed !!!,may be it's not what you planned,but does that matter make other plans,but you first priority must be to learn all you can about Myeloma,people will tell you it's a roller coaster,do learn to live with the highs and lows,enjoy today and do not worry about tomorrow,
As hubby is on trials he will not be allowed to alter the patten of taking steroids,but if he is on 40m it can be lowed to 20ml,but my advice if he can live with the regime,it will be more effective.
Good Luck Eve
Hi Babs
Back from your travels!!! And I bet planning the next one:-)
It's all good news for you and I am so glad,might just see you at bloods sometime as Slim is going to hospital to keep an eye on his platelets.
Warning parking has got worst!!! So leave early if you have an appointment.
Good Luck Bab,love Eve
Hi Carol
Yes I would agree!! eve
Hi Jeff
My husband has the same problem with damage to his back,gone from 6ft 1 to 5ft 8, this has changed slightly in 2 3/4 years he gained an inch,but with the back weak he now tends to walk with his spine bent,this is a men ex royal marine,who only new one way to stand!!!!
We have not even thought of any repair for his back,mainly because this disease has been relentless for nearly three years,he also has problems with his hip!!!,often for surgery to be successful ,you need to be off chemo,,so this is a none starter.
Hope this info helps,some times things are better left as they are rather than creating more problems.Eve
